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Thursday, May 24, 2012

Disjointed post. The heavy and the light hearted of it all.

So, with all the fanfare of Zoey and her oncology check up and such, I missed updating on a few things. Mainly, Matt running his first full marathon and pulling out a 3 hr and 39 minute final finish. 26.2 miles. Crazy good. His goal was to come in under 3 hrs. and 45 and looks like he blew that out of the water. Jess ran her personal best in the half marathon and crossed the finish line with a smile. She and I then ran to meet Matt at mile 24, where he declared: " Tired. Cramping. And I could cry." We gave him a much needed pick me up and we booked it back to the finish
line to see him cross in typical upbeat Matt style.

I sulked around the course that morning, missing the fact that I wasn't running. Unable to properly train due to all my recent health issues. But I am better and managing my new diagnoses and ready to jump back into training. My latest obsession: A sprint triathlon with Zoey. Trying to figure the logistics of it but I am nothing if not persistent, so I will give it my best shot.

The boys are out of school in 2 weeks and I am ready. Ready to not be a slave to the clock. I crave routine but I am anxious for things to ease up a bit. Things will still be busy, but not in the same way. We are preparing our summer bucket list and have a trip to Oregon planned for my nephews wedding and I am also heading back to NY for my 30th high school reunion. Surreal. Seeing I could swear I was just 30 myself. I hardly recognize the 17 year old girl, of days gone by.

Mark has been starting up a new show, which has necessitated EXTREME hours. His industry and I have a definite love/hate relationship and recently, as I was literally stumbling around the house, trying to take care of the kids, one of them 100% dependant upon me, and I mean while was at the mercy of one of my unrelenting vertigo episodes, with few options other than to soldier on, I found myself in most definitely the 'hate' phase of my feelings about Marks work and his proximity to the house. Something has got to give and one thing, for the first time ever in our lives of raising children, I have seriously contemplated moving closer to LA and Hollywood. We are losing so much precious time as a family, I am missing having a partner to help parent, that the thought of tacking on 3 plus hours to the day with each other, is luring me that way. Whether it is truly feasible, remains to be seen.

I have a post partially written about this 'extreme parenting' some of us do. My beautiful friend Elizabeth defines this crazy dance we do with raising not only our typical children but the raising of our 'other' children, as just that, 'extreme parenting'. It is much more complex and multi-layered than that but for now, take my Monday for instance. I spent the majority of my day amongst what I best describe as my 'people'. I schlepped my little love around the halls of CHLA. Feeding her on the go. Maneuvering her chair from one place to another. Changing a diaper in the bathrooms as I did wall squats with her draped over my arm in a version of a football hold. Holding her tiny body close, as to not let her flailing arms hit the needle during her blood draw. Normal stuff for me. All the while I can weirdly and effortlessly step into an environment that very few can imagine. I am surrounded by children with various disorders and diseases and equipment that I am sure, the majority of others have never glimpsed. I can engage in conversations that involve, life and death and loss and strokes and chemo and seizures and hemispherectomies and tube feedings and wheelchairs and, well the list goes on. And then, I flip this switch, come home, pack a picnic dinner, head over to the boys open house, where there is 700 plus kids and families milling around, doing their thing and you know what? I feel absolutely and positively out of place. Uncomfortable in my skin and the chip on my shoulder is becoming a boulder and all I can think about is how I want to get back to my 'peeps'. I let comments like " Joe, your sister is funny looking." or "Daddy what is wrong with that girl." and the reply, " I have ABSOLUTELY NO idea.", get to me. Really get to me. And all I wanted to do was go home. Quickly.

Anyway, more on that later. With some honest talk about what it is like to be a parent in this life we are living and continually learning, in. I try to articulate it to others, and admittedly do not do it very well. I fall short of expressing the continual balancing act that needs to be done. And how, we can live this life in extreme parenting with one foot in a world of fear, inadequacy and yes, sometimes even deep despair and sadness, and also derive joy of the immeasurable sorts from life as well. It's a crazy beautiful life but boy, is it difficult sometimes. A lot of the time in fact. That is the truth of the matter. That is sometimes what I really need people to know. How sometimes I want people to stand in awe and wonder how it is we all manage to stand upright on somedays. Well, that is the jist of it. Simplified of course. Some may be interested in it, some will not. I once had someone say that they like reading the good stuff here and not the downer stuff. I get that I guess, but it is not the reality. Not the reality of my life at least and I venture to guess not the life of many others, Whether you 'extreme parent' or not.

11 comments:

I feel you on this Heather. It is a wonder how we all manage to stand upright on somedays. Lately I feel that I'm just not doing anything really well...I'm disjointed...not just your post :) Parents of children with special needs are always pulled in so many directions: advocating for our children and their needs, fighting insurance and the system, teaching acceptance, practicing patience toward those we are teaching, navigating the uncharted -- all while processing our own grief and learning how to live a life that has been turned upside down. I personally stand in awe of you my dear friend and I know Bill does too. In complete awe of all that you balance and how you maintain your amazingly positive outlook. We love you.

Congrats to Jess & Matt. All that running and still a smile on each of their faces!

Um Heather - no sulking around the track - there will be time for running later - listen to your doctors. :))

Know it must be hard with Mark working so many hours, but maybe living closer would take a little of the pressure off. But then, you are happy with the boys' schools where you live. Hard decisions. (I worry about Mark driving in all that California traffic after working so many crazy hours. But... that is the nature of his work I guess. Decisions, decisions.

A trip to Oregon will be nice - and nice you are planning a trip back to Binghamton for you 30th awesome. (Hope we get to see you) up here in Syracuse

Oy - the working & the commute! I feel you, except I'm the one gone too much. I just had lunch w/an expectant mom and was being upbeat, except if she ever clicks on my blog she's going to see stress-stress-stress. Which has nothing to do w/any dx, it's just this working mom gig. And newly working for someone who thinks kids in general are useless and kids who need therapy and a few more MD appts than 'normal'... well, you can fill in the blanks there.

I was driving Bennett home the other day, feet were dipped in lava, spine on fire, nethers up in my ears, and he was not in the best of moods so anything in his hands he was throwing at the back of my head.

Not always like that. Some days, most days, he is giggly and OK back there.

But that day as I looked at the other people in the cars around me I realized I would never really relate to anyone not in this world anymore. I can't.

There are some rare exceptions. Some old, dear friends and family who get exclusionary rules and who I fight very hard to keep close to my inner self, but the rest?

I guess you could say the life they lead has become something almost alien to me now. Not their fault. I don't judge them so don't get me wrong, but when I hear someone complaining about certain things involving their typical kids I appreciate it, I really do, and I don't just dismiss it, but there is something just...not quite there for me with it. I get a glaze, a fog over myself when that occurs and there is a definitive separation as much as I attempt to fight it.

I get that every person has a slice of Hell's Pizza, I use that analogy all the time, and I get that every person's toppings are different.

I even get that in Our World our individual slices come loaded with less or more and there is danger there too, but as I totally just lost track of what I was trying to say in this blogjack let me close it out by saying that while we probably all have moments where we deserve awe or special appreciation, you certainly qualify for the prize more often than most I have known in this Blogoverse.

I agree with Victoria, disjointed is a great way to convey the life of special needs! Sometimes I love it, sometimes i hate it. But one things for sure, it has definitely changed me as a person, and given me a many more friends that I would never has otherwise! Love you!

I am not the parent of a special needs child but I am in awe of all of you - none of you are disjointed - you are amazing. I am so sorry the people at the open house were so rude. I think my children attending the former "special needs" elementary school in town has taught them that different is not only okay, but good. Because of this experience, I am astounded by the comments you are hearing, which would break my heart as a parent and also make me want to return home- but don't let it! I asked my children(who know Zoey from your blog) if anyone would comment on her appearance at a Jennings school function and they replied No, Why would anyone say anything? It really is an educational issue.. in general, i have found that if people are knowledgeable they are less rude.. but that is not your job, its ours. I also share a husband w/ a crazy job and a 2 hour one way commute. Total time 4 hours each day. We are crazy and have done it for 12 years (my oldest is 13 so essentially both my kid's whole life) I don't contemplate moving closer to NYC as this Vestal girl and the kids would hate it - but i do contemplate him switching jobs to one closer to home - the kids actually love his work as he takes them in for the day a few times a year and they find it exciting. I do understand this dilemna and your health issues have got to play into it as well. I'm certain you will come to the right decisions as a family, but the commuting is so tough. I clearly love your disjointed posts .. give us more.

Wow Colleen - well said. Ditto to people's rudeness! Obviously they were not brought up correctly!!!

Vestal to NYC area - now that is also a huge commute. Talk about small city to large city - I'm sure your children enjoy going to NYC with dad. awesome! Museums, broadway shows, street corner vendors, etc, etc Have lived in Syracuse all my life - been to the "City" about 5 times. PS How could you ever leave our beautiful fall season for NYC!(We won't discuss winters in Central NY)!! :))

OK heather, I will ask again... where can I get an Aunt Bluebelle from Syracuse? She is so special, and so are you! Enjoy the trip to Binghamton....and so cool that you are flying there.. I did not forget that flying is not your favorite activity... you go girl! P.S. Nirchis is now on the vestal parkway w/ chicken speidie pizza....just keep swimming...

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